Eleven-year-old Shannon Jones, (pictured), has cerebral palsy. She is one of 70,000 UK disabled children who use wheelchairs and other mobility aids. During an eight-month wait for a new wheelchair last year, Shannon’s mother was forced to push her around in a baby buggy.
Shannon recently joined a group of campaigners at 10 Downing Street to deliver a report highlighting the struggle of many disabled children and their parents to get the right equipment.
Don’t Push Me Around, by children’s charities Barnardo’s and Whizz-Kidz called for an end to gaps in provision.
The report, published last week, said that while shortfalls in wheelchair services have been raised by campaigners over the past 20 years, a lack of equipment continues to hamper children’s development and limits their ability to take part in everyday activities.
Basic human right
Wheelchair user Ruth Owen, chief executive of Whizz-Kidz, says: ” Anyone who cares about children should agree this is an outrage. It is a child’s basic human right to have the right support to help them flourish, so why are disabled children being discriminated against in this way?”
Shannon’s mother Shirley Jones, from Isleworth, Middlesex, says being seen in a baby buggy was embarrassing for Shannon: “Like any eleven-year old, she cares what she looks like. It also made it difficult to take her out.”
She is angry that Shannon had to wait so long for her wheelchair.
“Any parent would not want their child to go without shoes for eight months – and this is no different,” she says.
Shirley has also experienced frustration in getting equipment that is of the right quality and easy to use.
One of Shannon’s first pieces of equipment, a showering chair was “old-fashioned and rusty,” while one of her recent wheelchairs was “the size of a tank.”
Shirley wants to see an end to inappropriate equipment and a reduction in waiting times.
“You feel like you have to fight for everything when you have a disabled child, and the kids are fighting for their independence,” she says.
According to the Barnardo’s and Whizz-Kidz report, up to three quarters of families do not get the equipment they need.
It also found that families experienced an average waiting time of between six to nine months, with the longest at 14 months.
This was against good practice recommended by government standards for NHS wheelchair services. These stipulate minimum response times of 15 working days for locally-held stock, 30 days for orders from manufacturers and 30 to 65 for made to measure.
Whizz-Kidz, which provides mobility equipment to children and young people, did a survey of families it had helped last year and found that nearly half of local services could not provide equipment because of lack of funds.
An unpublished snapshot of cases collated by disabled children’s charity Contact a Family also illustrate many of the report’s concerns.
In one case, a 10-year-old with cerebral palsy who had grown out of his powered wheelchair was unable to get a replacement because the local authority said there was “no money.”
In another case, a disabled teenager with both legs in plaster was provided with a wheelchair so small that his legs and arms dangled over the sides. The hospital allegedly said there was “nothing else.”
Neera Sharma, principal policy officer at Barnardo’s and one of the report’s authors, says lack of wheelchair provision for disabled children is seen as a “low priority” because of a lack of performance targets.
“Little is being done at a strategic level as primary care trusts and strategic health authorities do not have to meet benchmarks on wheelchair provision,” Sharma says.
She also explains that funding restraints on the NHS have resulted in strict eligibility criteria.
“There are no specific wheelchair services for children, particularly under-fives who are more likely to have to use pushchairs instead.”
Sharma wants to see action to implement the recommendations of the government’s disability strategy, Improving the Life Chances of Disbled People, launched in 2005.
This called for assessments and equipment for disabled children to be delivered promptly and for strategic commissioning from councils, children’s trusts, primary care trusts and other partners.
Jo Webber, deputy director of policy at the NHS Confederation, which represents the majority of NHS organisations, said:
“We agree that disabled children should have access to the equipment that will enable them to achieve their full potential. Primary care trusts need to work with their local children’s trust to make sure these needs remain high on the priority list when commissioning children’s services.”